Clinical Symptomatology, Cognition and Psychosocial Wellbeing in Adolescents With [ME/CFS]: A Cross-Sectional Observational Study, 2026, Chau+

[SNT Gatchaman]

Clinical Symptomatology, Cognition and Psychosocial Wellbeing in Adolescents With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Cross-Sectional Observational Study
Tracey Chau; Elisha K Josev; Adam Scheinberg; Natalie Thomas; Fiona McDonald; Colette Reveley; Paul R Gooley; Christopher Armstrong; Sarah Knight

AIM
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling illness that frequently begins in adolescence, yet adolescents with ME/CFS remain an under-researched population. We aimed to characterise the cognitive and psychosocial wellbeing of adolescents with ME/CFS relative to normative benchmarks and unaffected age-peers.

METHODS
Adolescents with mild-to-moderate ME/CFS (n = 25) and healthy controls (n = 25) aged 10–19 years were recruited in Melbourne, Australia. Each completed a set of clinical questionnaires and cognitive assessments to assess ME/CFS symptomatology, school functioning, psychosocial wellbeing and cognition. Their caregivers also completed questionnaires regarding their psychosocial wellbeing and everyday executive functioning.

RESULTS
Adolescents with ME/CFS showed significantly reduced information processing speed, though other measures of intellectual functioning did not differ consistently between groups. The ME/CFS group also reported significantly poorer sleep, quality of life and higher levels of anxiety and depression. Caregivers further identified significant attention and working memory concerns in the ME/CFS group, but reported no differences in internalising behaviours between groups.

CONCLUSION
Adolescents with ME/CFS experience substantial psychosocial and physical burden because of their illness. Cognitive difficulties in ME/CFS may reflect inefficiencies in information processing speed and fluctuating symptom burden. Discrepancies between adolescent self-report and caregiver ratings underscore the importance of inclusive perspectives in ME/CFS management. These findings support the need for flexible, paced educational and clinical accommodations and for further research into the dynamic cognitive profile of adolescents with ME/CFS across a more representative population.

Web | DOI | PDF | Journal of Paediatrics and Child Health | Open Access

 

[Utsikt]

Adolescents with ME/CFS showed significantly reduced information processing speed, though other measures of intellectual functioning did not differ consistently between groups. The ME/CFS group also reported significantly poorer sleep, quality of life and higher levels of anxiety and depression. Caregivers further identified significant attention and working memory concerns in the ME/CFS group, but reported no differences in internalising behaviours between groups.

This is very disappointing. Questionnaires in general are quite useless, but the ones that are supposed to assess anxiety, depression and internalising are particularly bad. The limitations do not even mention the poor construct validity of questionnaires.

What are these children supposed to gain from this?

Furthermore, accommodations at home, in the community, and at school should prioritise flexible pacing, energy management and assessments of accuracy over speed when seeking to support adolescents with ME/CFS.

This last paragraph of clinical implications is the only place where pacing or energy management are mentioned, so it’s clearly not something we needed this data to know. There is no explanation of what «assessments of accuracy over speed» means, nor how it can be used to «support» people with ME/CFS.

ME/CFS is a disabling, multi-systems illness that significantly reduces adolescents' quality of life and emotional wellbeing. Although adolescents with ME/CFS appear more vulnerable to processing speed difficulties, the illness does not appear to impact inherent cognitive capacity.

The conclusion is not supported by the data because the sample is not representative for all adolescents with ME/CFS. This is like saying that MS does not affect the ability to eat because you’ve only seen mildly affected patients. The authors know this because they acknowledge it in the limitations.

Instead, fluctuating symptoms and other environmental stressors can affect how consistently adolescents are able to apply or access their cognitive skills.

What data is this based on? Is there anything that indicates that if you just adapt the environment enough you can access your cognitive skills? Or might it be that the disease itself sets a hard upper limit for virtually everything, all the time, beyond «fluctuations» that do not even begin to encompass the realities of living with PEM?

With support from clinicians and education teams, and by realistic management of adolescents' and caregivers' expectations about the impact of ME/CFS on psychosocial wellbeing and cognitive functioning, we may be able to facilitate more meaningful accommodations and management strategies for adolescents with ME/CFS.

«More meaningful» is a weird way of describing the bare minimum that should be done. These are necessities, not nice to haves.

 

[rvallee]

These findings support the need for flexible, paced educational and clinical accommodations and for further research into the dynamic cognitive profile of adolescents with ME/CFS across a more representative population.

"Listen to your mother, kids. Aim low. Aim so low, no one will even care if you succeed. Dinner's in the oven. You want some butter, it's under my face."